Kiliś-Pstrusińska Katarzyna, Medyńska Anna, Adamczyk Piotr, Bałasz-Chmielewska Irena, Grenda Ryszard, Kluska-Jóźwiak Agnieszka, Leszczyńska Beata, Olszak-Szot Ilona, Miklaszewska Monika, Szczepańska Maria, Tkaczyk Marcin, Wasilewska Anna, Zachwieja Katarzyna, Zajączkowska Maria, Ziółkowska Helena, Zagożdżon Ilona, Zwolińska Danuta
Department of Paediatric Nephrology, Wroclaw Medical University, Poland.
Clinic of Paediatrics, Nephrology and Endocrinology, Silesian Medical University, Zabrze, Poland.
Ann Agric Environ Med. 2014;21(4):876-81. doi: 10.5604/12321966.1129951.
Chronic kidney disease (CKD) in children burdens life of patients and their families. Little is known about parents` assessment of families' social situation. However, the knowledge of the details of a patient's and his family's life standards might influence modification and optimization of applied therapy. Therefore, the main goal of the present study was to explore the selected elements of life situation of patients suffering with CKD as well as their parents, depending on the CKD stage and appropriate treatment.
Cross-sectional national study was conducted. A total of 203 children with CKD and 388 their parent-proxies (196 women and 192 men) were enrolled into this study. Patient data and questionnaires filled by both parents, concerning social-demographic parameters and assessment of changes in families after CKD diagnosis in the child, were analysed.
CKD children are being brought up in proper families whose financial situation is not good. Children need help in process of education. Perception of current situation differed between both parents in the change of the income source, taking care of CKD child, change in social relations and evaluating relations with medical staff. Parents do not obtain proper support from social workers.
Families of CKD children require support in area of financial and educational help for school children. The discrepancies in evaluation of family situation between mothers and fathers of ill children might be the source of conflicts possibly resulting in worsening the outcome for CKD children.
儿童慢性肾脏病（CKD）给患者及其家庭的生活带来负担。关于父母对家庭社会状况的评估知之甚少。然而，了解患者及其家庭生活水平的细节可能会影响所应用治疗方法的调整和优化。因此，本研究的主要目的是根据CKD分期和适当的治疗方法，探索CKD患者及其父母生活状况的选定要素。
进行了一项全国性横断面研究。共有203名CKD儿童及其388名家长代理人（196名女性和192名男性）参与了本研究。分析了患者数据以及父母双方填写的关于社会人口统计学参数和儿童CKD诊断后家庭变化评估的问卷。
CKD儿童在经济状况不佳的正常家庭中成长。儿童在教育过程中需要帮助。父母双方在收入来源变化、照顾CKD儿童、社会关系变化以及评估与医务人员的关系方面对当前状况的认知存在差异。父母未从社会工作者那里获得适当的支持。
CKD儿童家庭在为学龄儿童提供经济和教育帮助方面需要支持。患病儿童的父母在家庭状况评估上的差异可能是冲突的根源，这可能导致CKD儿童的病情恶化。
